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2021 Treatment update

“You will need to pack your bags and head to Children’s Hospital, we think it’s leukemia.”

Only a few days after a Complete Blood Count, Christy, Hailey's mom, heard these words from Hailey’s doctor. Hailey had just started kindergarten.

At summer dance camp, Hailey won the award for “Most Tired.” That puzzled her mom. As kindergarten progressed, Christy noticed the fatigue. She assumed that kindergarten must be exhausting for children. Christmas was approaching when she noticed Hailey’s bruises, in odd places on her body.

Here is Nick's story, as told by his mom, Pamela Karavite

We made it to another treatment day without anyone in our family getting sick! The week leading to treatment day has become pretty worrisome for me. What if someone in our family gets sick with or is exposed to COVID? Josh will not be able to get his infusion within the treatment window and then what? The questions I never thought I'd have to wonder about.

I know my fiancé well.  Even though he seemed to be healthy and his job kept him active, I knew it had been a long time since he had a medical physical, so I pushed him into an appointment.

Without symptoms, the doctor suggested routine blood work as a part of the physical.  We were surprised that all his counts were low.  The doctor decided to check again in a month, so I made sure that his diet was healthier and that he took vitamins, hoping that would correct any problem.  

As a typical community college student, Mariana was busy. Classes, studying, day trips, all were part of her life. Yet during one shower, she dropped to the floor, suddenly dizzy. A few weeks later she would be out of breath, with unusual bruises on her skin.

Alayna was a toddler when she was diagnosed with severe aplastic anemia aplastic anemia: (ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fail

Traveling with a rare disease 

Since treatment in July 2019, I have still been transfusion-dependent, receiving both blood and platelets. I get so short of breath when my blood is low. I really hate this disease. Because I’m still transfusion-dependent, I go back and forth for labs, doctor’s appointments, and transfusions. 

My diagnosis with Paroxysmal Nocturnal Hemoglobinuria Paroxysmal Nocturnal Hemoglobinuria: